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Feeding Clinic: Day 3

Wednesday, May 18, 2011

We had another good day today.  We are starting to get the hang of the schedule.  Bennett continues to do well with his feeds.  His Speech Therapist is trying to increase his fluid intake by mouth.  They are experimenting with new cups to see which ones he prefers.  His Speech Therapist says he seems to struggle with tongue and overall mechanical ability to drink.  So, they are working on that.

Bennett is getting mostly blended foods during his Feeding Therapies.  That means the Speech Therapist or "Feeder" spoons most of his food by mouth.  There is a pattern of which foods are given and when they are given.  Not even water is given without strict specifications.  His sessions are extremely controlled so he doesn't get to choose anything accept whether or not to accept the food and eat it.  (By the way, the Feeding Therapists say Bennett loves Elmo and seems to do about anything for more Elmo.)

Brian and I were more tired today.  Both the boys get our full attention so all of this adrenaline of our first few days is starting to wear off.  It is really important that Brian and I both get our sleep so we can be fully alert each day.  So, we are both paying close attention to each other's needs for rest.  We work towards having at least a 30-45 minute period each day for each of us to rest while the other one is working with the kids.  Bennett really needs to bond with us when he's out of his therapies.  And Oliver needs to continue to have us fully accessible to continue to feel attached to us in the midst of this incredible new change in his life. 

We are looking forward to returning home this weekend for our CF Walk.  This will be an opportunity for us all to return to our home, rest, seeing friends, gather anything else we need from the house and return back to the hospital.  We have family coming to stay with Bennett while we are gone.

Today, Oliver's "adventure" included eating lunch and visiting the trains at Children's Medical Center (a children's hospital in Dallas).  Oliver enjoyed it alot.  Then, we found a park near the Feeding Clinic that Oliver just loved swinging in.  We are all getting a kick out of this good weather!  It's beautiful and feels refreshing to be outside.  We're hoping to view the airplanes at DFW's observation deck sometime this week.  We see large planes going overhead all the time.  It's pretty fun to watch since we must be in a airplane flight plan area. 
I have a few more thankful moments to add to my list tonight...
17.) I am thankful for Bennett's good health and decent ability to eat.  We have met several of the children here.  One child Oliver's age, whose mother I have really enjoyed getting to know, has such severe eating phobias that she has been known to starve herself to serious health levels, even refusing to drink water.  She lost weight today and is really scaring her parents as they are at a loss over what to do.  We also met two separate children who are in the Rehab program here.  Both (2 years and 4 years old) had falling accidents.  The 4 year old fell from 3 stories high onto his home's cement driveway.  Both children came 6 weeks ago barely able to move and in a coma.  Both are severally disabled but talking and walking somewhat.  I cannot imagine going through such a terrible experience...having a healthy child who has such a severe accident he almost dies and then comes back to life but not in the way you had hoped.  Both families are very sweet and have incredible strength to deal with such tragedy.  

18.) I am thankful for someone who cleans the room, takes out the trash and cleans soiled laundry for us at the hospital.  I'll consider it a free maid service, who doesn't love that?. :)

19.) I am thankful for an excellent staff here at Baylor Our Children's House Feeding Clinic.  The staff is awesome all around.  It is the best hospital staff I've experienced.  It is probably because none of the nurses are overworked.  There are no seriously ill children here and most children are not "sick" at all.  So, the staff is laid back and respects the parents' wishes (something I really appreciate).  Children here do not wear hospital gowns.  Most use their rooms more like a dorm room than a hospital room.  Every person on staff seems to love children and does whatever it takes to make kids feel good.  This relaxed experience is wonderful and makes our time here feel less stressful.

20.) I am thankful for free babysitting service by the nurses.  So, apparently, not so long ago, it was a rule that any children in the "Feeding" program had to stay at the hospital without their parents from 8am-6pm.  Parents were not allowed to be at the hospital at all as they often caused their children alot of stress in between sessions.  However, recently, the staff decided that it would be ok if parents stayed at the hospital, they just can't come along to any of the sessions during the first two weeks.  Since nurses used to be required to babysit patients in addition to caring for their health, the program here continues to support doing so, even when parents could be caring for their kids.  Therefore, the staff has repeatedly encouraged us to go out during the day and come back when we want.  So, Brian, Oliver and I leave for about 3 hours each morning during Bennett's Feeds and Naptime.  They are responsible for putting him down for a nap and caring for him when he wakes up, if we aren't back in time.This is not like any other hospital we've ever been to.  I have a hard time leaving Bennett at the hospital alone (it's a bit counter intuitive to me at this point).  But we have appreciated it when we've needed it a few short times (mainly to spend with Oliver).  It's nice to know patients are cared for here and will be watched over for free when parents need to take a break for themselves.  I'm definitely thankful for that!

2 Responses to “Feeding Clinic: Day 3”

  1. So glad Bennett seems to be adapting very well to his feeds! Meanwhile, you have a lot of supporters here in Waco! We are excited and ready for the walk on Saturday. I got teary-eyed today when I noticed that a teacher at my school slipped a $100 check into my sponsor envelope!! I had sent a staff email out about Bennett with his and Caden's picture imploring people to either pray or donate. I am thinking the teacher might have her own personal connection with the disease. Praying for y'all!

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  2. This is a wonderful update. I'm so glad I have the ability to be a part of this experience thanks to your blog. Hugs to you and the whole family.

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